I was told I have ls
Posted , 8 users are following.
I was told by the dermatologist that I have ls. I am 27 and I am so uncomftorable with anal itching exct. This is so embarrassing but I don’t know what else to do. The doctors aren’t helpful. I haven’t found the right doctor to help me and it’s getting expensive. I’m waiting to get into another specialist in April. Both my obgyn and dermatologist have told me to use colbatosol I’m using it so much that I don’t think it’s working. Please help. Which doctor specifically deals with ls? What can I do to help the itching calm down until April?
2 likes, 9 replies
Nancy_K_B sarah47044
Posted
Good evening, Susan47044
sorry you are the third Susan who is using numbers to identify yourself... welcome to thie forum which is fabulous. I've only been her a month or so myself and I'm 72 and just diagnosed but probably had it for years. I too started with the anal itching.
Anyway, DOn't be embarrassed. it is the medical professions embarrassment of not being taught and then not learning the needed nutrition to be of service.
I recently posted a long list of items that I gleaned both from reading other women here taking about 4 days of straight reading back at least 6 years. Then I went on line and foudn the best science to validate the nutritional protocols. Another woman, Ann/Starlight also built herself a list of actionable things to do. We've posted in the lat 3 days i think, Mine is called Maintenance/Recovery Premise from Lichen Sclerosus
which you can look up.
Sarah - it starts with KNOWING that this is an autoimmune disease so rad anything and everything about autoimmune. .. and That starts with Vitamin D3 LOTS of vitamin D3. YOu'll se the defense of that in my write up.
(to give you good feeling - when I discovered that I took 15,000 iu's a day and had the itch down in 3 days, the sores were closed within 2 weeks but that might have also been helped by acupuncture as well.
I haven't taken the clob because i'm not partial to steroids, AND then I found out besides that, they wanted to charge me $180 which don't have, and insurance wont' cover.
Oh, feel better soon, dear Sarah 47.. and keep reading everything.
sarah47044 Nancy_K_B
Posted
Guppy007 sarah47044
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Hi Sarah, i don't know how to say this without it sounding bad..but the fact of the matter is that you must not look solely to your doctor for help, because what most of us have found is that the 'specialists' arent special!! often they are clueless and of course won't admit to that. That being said, all is not lost, but you have to be your own advocate for this disease and what that means is that you need to read and read until you know your stuff..because the docs dont. Look at some of the old threads on here, make notes, and compare your symptoms with women that are actually suffering from this rather than listening to someone who hasnt taken the time to educate themselves on this disease....it is just laziness on their part.
Sex for some of us can be difficult, pre-lubrication helps a lot BEFORE sex.
sarah47044 Guppy007
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Guppy007 sarah47044
Posted
sarb73328 sarah47044
Posted
This is such a common cry on this thread sarah47044, that doctors just leave you high and dry with no real explanations or advice for maintenance. It is truly shocking and I guess down to the fact that they know so little. So as Nancy says, glean as much information as you can from all us ladies on here and piece together your maintenance weapons, changing moisturizing creams from time to time as our bodies get used to each one making them work less efficiently. I also think we should complain to our doctors and 'specialists' a little more. Maybe just maybe that would encourage some of them to do more research themselves.
Good luck.
sarah47044 sarb73328
Posted
deborah82032 sarah47044
Posted
I too have Ls which started 10-12 years ago with a small white spot in the vulva area . I could tell my Dr. was concerned, however was very illusive with me about it. Three years later, she recommended that I see a specialist about it, however she never mentioned a name for it. I researched it and found the name. When I went to see the new Dr. I told him what I thought it was and he said you are correct. I used to get a galted feeling in the rectum all the time. I began to use wipes after every bowel movement. Has greatly relieved it. ALso be careful using the Clobetsol too much. I use a pea size amount three times a week, If I get a little bit of itching during the day, I use Emuaid. The LS spreads in the vulva area like a figure eight. That's why your rectum is also affected.
Bridge_of_Sighs sarah47044
Posted
Hello Sarah
Yes of course it's ok to be glad. It's lonely to feel you're the only one. I used to want to shout at friends who moaned about minor health problems and expected sympathy when I couldn't talk about mine... So nice to find a community of women who understand what you're going through.
There are many threads here about doctors' ignorance and incompetence. Look for a vulval dermatologist, or vulval specialist. A friend swears that she gets the best treatment from the sexual health clinic.
A while ago there was a thread on LS and thyroid, you could see if you can find it. It seemed a common combination.
Hugs to you, you are so not alone, and we are all here to help and support each other.
Bridge